Is it the death or the dying?

During my first interview with gerontologist Robert Butler, he quoted Schopenhauer, “who always said midlife is that point in time of life when you begin to think backwards from death instead of forward from birth, which I thought was a pretty shrewd observation.” It’s certainly true of my peers. We’re starting to pay the physical price for the excesses of our youth. We’ve started contemplating goals unmet, places unvisited, bucket lists. When he turned 50, my partner Bob said, “I’ve got to stop thinking I’m going to do things later. Now is later.”

No question that intimations of mortality start to frame the agenda. I’m not merely bummed about time running out, or the party going on without me, I’m afraid of death itself. But I take great comfort in a mounting (if largely anecdotal) body of evidence, that the old old are not afraid. And I think a big piece of that fear is less of death than of a ghastly precursor: suffering, tied to tubes, helpless, unable to be present with the people we love.

In the August 2, 2010 issue of the New Yorker magazine, an article by physician Atul Gawande described the failure of modern medical practice to meet the meet the most important needs of the dying. He wrote, “In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality and created a new difficulty for mankind: how to die.” Very sick people used to die fast, but they are now the exception. Modern technologies prolong both the struggle with disease and its inevitable end, blurring the line between the ill and the dying and rendering decision-making all the more fraught. With 25% of all Medicare spending going to the 5% of patients who are in their last year of life — and for whom the benefits are medically and ethically debatable — the system is itself on life support.

Gawande cited a study from the Coping with Cancer project that shows that terminally ill cancer patients who received intensive medical interventions (ventilators, defibrillators, intubation) “had a substantially worse quality of life in their last week than those who received no such interventions. And, six months after their death, their caregivers were three times as likely to suffer major depression.” An intensive care unit, he pointed out, is a lousy place to die. In “this borrowed, fluorescent place, the end comes with no chance for you to have said goodbye or ‘It’s OK,’ or ‘I’m sorry,’ or ‘I love you.’” Gawande continued, “People have concerns besides simply prolonging their lives. Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others.”

There is a solution: hospice care. The hospice movement is gaining momentum, and I hope (in fact presume) that it will move from fringe to mainstream as we boomers aspire to the same control over our deaths that we’ve exercised over much of the rest of our lives. Gawande admits to the presumption that hospice care hastens death, but across a range of medical conditions statistics show otherwise. “The lesson seems almost Zen: you live longer only when you stop trying to live longer,” he observed.

The most interesting point came out of an initiative by the Aetna insurance company to reduce the astronomical costs of typical end-of-life care. The company offered hospice services to patients without the standard requirement that they forego curative treatments. Hospice enrollment jumped from 25% to 70%. Costs dropped because hospital stays did too; patients opted for less care even though it was covered. Here’s the really anti-intuitive part: when Aetna reverted to its standard conditions — patients had to choose between hospice or ongoing curative treatments — the results were the same. “Satisfaction scores went way up,” Gawande wrote. “What was going on here? The program’s leaders had the impression that they had simply given patients someone experienced and knowledgeable to talk to about their daily needs. And somehow that was enough — just talking.” The upshot: “People who had substantive discussion with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation, and to spare their family anguish.”

While Gawande is focused on the physician’s role, Deborah Carr, a professor at Rutgers University who studies aging and the life course, proposes swapping “patient-centered” care for “patient-and-his/her-family care.” In a talk at the Council for Contemporary Families annual conference in April, 2010, Carr described such conversations as vitally important for everyone involved. “End-of-life discussions shape our families, not just other way around, and have implications for how family members cope and carry on after our deaths,” she explained.

Family members don’t always agree. Some may encourage advance care directives while others resist them, for complicated and sometimes irrational reasons. Arguments strain relationships, sometimes permanently. “Our loved ones want what is best for us, but also want what is best for their emotions and ideologies,” Carr pointed out. “A big predictor is whether they saw a family member die a miserable death.” According to Dr. Susan Block, a palliative-care specialist quoted in the New Yorker article, about two-thirds of patients are willing to undergo therapies to please their families, even if they themselves are opposed. Sometimes it’s the patient, no matter how debilitated, who refuses to let go. Ideally consensus can be established well before any tough decisions have to be confronted. Carr recommended involving the whole family in an end-of-life discussion, and defining “family” as broadly as possible. When older people appointed a friend as their medical power of attorney rather than spouse or child, for example, the adult children got along better.

The stakes are high. Although the great majority of people want to die at home, 75% will die in nursing homes or hospitals, at enormous financial and personal cost. There the default is treatment, which typically addresses a specific symptom rather than the overall well-being of the dying person. Understanding what she or he wants, knowing in clear conscience whether to call the ambulance or put down the phone, is a gift to all, and an enduring one it turns out.

This conversation is not an easy one to have. Gawande admitted with engaging honesty how hard it was to withhold hope in the form of an experimental drug or an additional operation. The patient (or prospective patient) needs to be open to the discussion, and his interlocutors exquisitely sensitive.

I think of my best friend Virginia’s father Pete, who handed his kids a typed-out list of his assets a few years ago, at 87, “in case something happens.” Something happened: he got aspiration pneumonia, was told a feeding tube would be necessary to keep his strength up, and opted for hospice care. In making the decision, this retired corporate lawyer took back the reins that had slackened since a stroke 8 years before. He cheered up; friends and family flew in to express their thanks and apologies and farewells; and he died peacefully three weeks later, on July 10th.

I think of Mary, his wife of 60 years. Hers was the first medical crisis of the 2010, and she opted for the feeding tube. Still sharp, sense of humor intact, she has chronic back pain, the blank stare of Parkinson’s, can no longer read, “doesn’t want to be a burden,” and awaits the frequent visits of her dutiful offspring, only one of whom lives in the same city. When will her death come, and how?

I think of my in-laws, Bill and Ruth Stein, who inspired this project. I’m willing to broach the subject, and with the permission of their son and daughter will do so. My guess is that they’ll see it as a naked land grab and change the subject in a rage. That’s too bad, for all of us. I got farther with their son, my partner Bob, who wants to hang in until he can no longer have a conversation with his son Murphy. Conversation as in communication of any sort: smile, tapping of hoof, twitching of snout. His living will and durable power of attorney go unsigned while mine sit smugly in my file cabinet, but I’m not sure I can come up with a directive that’s half as clear.

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One thought on “Is it the death or the dying?”

I’ve done hospice volunteer work and seen many people in all stages of the dying process. My brother and sister and I made it possible for our mother, who had inoperable cancer, to die at home. We saw our father waste away mentally and physically from Alzheimer’s. Now we’re watching our aunts and uncles drop off one by one from strokes, cancer and heart disease.

One of the natural features of aging is that we come face to face with death and come to realize that we too, personally, are going to die. Once you’ve seen your parents die, you really get it. And if you’re like me and have a spiritual and psychological interest in death, you get it even sooner. But the sad fact is that most of us in this culture (I’m talking USA) consider death a morbid topic and only want to see it on cop shows and an ongoing stream of vile, bloody movies. The real thing sends us running in the other direction. We don’t want to talk about it, think about it, plan for it or prepare for it until it’s upon us. We subject ourselves and our loved ones to pointless suffering when we’re terminally ill in order to “fight the good fight” and not “give in” to the nature order of the end of life, and doctors push that too. A friend of mine had to come to the aid of her mother, dying of pancreatic cancer, who was being pressured by the rest of the family into taking chemotherapy drugs that were putting her in bed all day and making it impossible to walk. My friend said, mom, you don’t have to take those drugs, and mom said thank you, I don’t want to. She died a month later, but she died a much, much better death than she would have if she’d caved to the pressure to treat an incurable illness with toxic chemicals.

I’m not saying don’t do all you can to keep living, if you have a shot. But personally, having seen it from all sides, including my own brush with death, I’m convinced that the problem is not death itself, but the way we die: the way we draw it out, suffer, watch our loved ones suffer, and especially how we don’t allow our loved ones to die when they want to, when they just can’t take one more chemo treatment, one more surgery, one more hypodermic or IV in a vein that is totally shot. I believe every person should do hospice volunteer work for a short time. That way we would all see what dying looks like, stop being afraid of dying people, develop compassion and awareness of the needs of other people IN THIS MOMENT, and recognize in the faces of other dying human beings our own selves. Then maybe as a society we would figure out how to treat dying as a natural transition, rather than an extended descent into misery, isolation, loneliness and pain.

And for sure, the laws need to change so that every person has the legal right and means to end our own life when we see fit — and not all alone, hiding out for fear of implicating somebody, but in the company of our loved ones, holding our hands and wishing us bon voyage.